Friday, August 30, 2013

Where's my handbook?!

When you have a child with special needs and that has a terminal disease you would think that before you leave a hospital or a Dr.'s office someone would say, "Here's your handbook. Everything you will need to know about the services you will need and your child is entitled too is in here. Along with a FAQ section and a toll free number so that if you ever have any questions the person on the other line can answer them for you."

THAT DOESN'T HAPPEN! There is no one to talk to, there isn't a start HERE path you can take, there is no seeds for that money tree that you are going to need. You feel alone. I felt alone, but not for too long. Once I turned my diary into our blog I started meeting other moms. Some were in a similar situation, some in a worse situations, some that offered help every way they could. There were moms that shared the story of their child and what they were going through and I realized that we were very eerily similar. They didn't get a handbook either. I wasn't alone. It might be terrible to say, but I had some sort of peace in knowing I wasn't alone. Unfortunately having a special needs child or a chi;d with a terminal is disease is affecting millions of children. It's not just me. I don't think you get that when you first get hit with that kind of information. You get to a point where you stop thinking, "why is this happening to ME?" and think, "why is this happening to all these kids?"

After months and months and finally getting Hailey into therapy, I started to open up to the other moms in the waiting room. I can talk to anyone so I figured it's not going to hurt to ask if they had info on services. I started getting information! I learned about the Desert Regional Center I learned about Olive Crest Respite Foundation. I'm in the process now to be involved in taking part of the services they offer. Nothing happens overnight and there are papers to be filled out and medical records to submit but it's a start. Something that I might have learned about too late.

When I first opened this blog up from my diary it was all about what we were doing and dealing with, now it has transitioned into information on Hailey and information to help others in the same situation. Have you checked out our resource tab? I try to keep that updated and I am hoping it helps. If just one person gets info that I provided to them then I will feel like we made a difference. Hailey made a difference. All that Hailey has had to suffer through had enabled her to help another child. That would be incredible!
If you have information on services or resources please SHARE! Leave a comment on our facebook page!

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